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Hi friends old and new.
It has been quite a while since I last typed in the ul for this group. Lots going on here as always and not as much time or energy to keep up with everything.
Destress your life....that was the advice from the rhuematologis when he finally agreed lupus was a deffinite part of my diagnosis....hmmm may have been better if he had given that instruction to all those around me! LOL

we are continuing to follow our complaint against the local authority and district council due to their failure to meet the needs of the children. we hav gone through the three stages of complaintwith the district and are awaiting the stage three review with the Local Authority...it is all very stressul and draining and has had a very negative effect on my health. there is so much of the care of my children I find increasingly difficult that would be so much easier if they would step in and provide the facilities we need. The government guidlines and legislaton seem to be straight forward to veryone outside of the circle of professionals who matter!

On top of these hassles we have had Rosie seriously ill on three occasions and in hospital..sh had a series of 6 tonic clonic seizures on Christmas Eve and spent the night in hospital we really thought we were going to lose her that night. Once again she is unwell and it is realy hard no to belee we have at last reached that stage where we must accept her poor prognosis. we were told 5 yrs and she will be 16 in May, Rosie is a fighter...she would not have come this far had she not been, but her body has taken a huge batering in the last fw months and I really am afraid her ability to fight must be drained now.

Jonathan has amazed usso far this winter, a child with chronic lung dsease and so far he has escaped all the bugs unng rife through the rest of the family.
Our younest Eve has been having horrible problems wth her own saliva...the surger y she had earlier in the year has done wonders for her weight gain and general health, but has caused her to be better hydrate than she ever had been. The downside of this is she now has a normal amount of saliva but is still unable to swallow. So if she is laid on her back or even reclined back in a chair or my arms she drowns...breathing appears to be optional and her colour can change quite alarmingly. thankfully so far we have been able to stimulate her to breathe and cough just by a rapid bash on the back and tippng her head down. it is a little worryin though to say the least. She has also had a review by the spinal surgeon who has confirmed that her spine is rapidly twisting and curving she is ultimately going to need major spinal surgery.
So how does one destress their life??? i did go through a few weeks of feeling as if I was winning...my drug box has expanded but I did feel les naseous with pain, and even started to gain a little weight...that has gone again! and joints are not doing to well! more than anything though is the fatigue. BUt fatigue that doesn;t seem to let me sleep. How can you feel so exhausted but lie awake watching the minutes change on the clock? I seem to be getting on top of th negative woe is me feelings one day and then find myself bursting into tears at the most stupid of things the next.
I am guessing we will possibly be ending up in hospital with Rosie very soon again so excuse me if I dont pop in to speak again anytime soon.
I am alo waiting for the result of my MRI....now there's a funny story...apparanlty I am the only person the technician knows of who has falln asleep inthe MRI scanner....I did wake with start at on point cause it sounded just lik my mobile phone wth a message!!! lol

HUgs and prayers for all who need them...I have read a few messages but not responded I'm afraid...just commited names to prayer!
 

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Dear Tina,
I am sorry it is all so stressful with the children and the Local Authority. You really need help. Glad that you seem to have a dx though and also that your Son has stayed clear of bugs.
x Lola
 

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(((((((Tina))))))))

Whenever you read this, I will keep you in my prayers. You and your dear young ones who obviously have such a hard fight in this life. I am glad to see from your signature that you have strong faith. "Let not your heart be troubled." So easy to say, so difficult to do. Be strong. Remember that you are not alone.

Hugs and prayers,
Sunny
 

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Hi Tina,

I was wondering where you had got to :)

I'm sorry to hear that things have been so stressful and difficult for the whole family.

Have you said to your doc that you are still so tired and about the joint pain and sleeping problems? When I end up looking at the clock all night like that it is always because I'm in some kind of pain. I don't really recognise it as pain - probably too used to it, but I just can't seem to get comfortable at all. The odd thing that I noticed was that as soon as I took an anti-inflammatory in the evening, I slept like a baby. The same thing happened as soon as I was put on prednisolone. At that stage I hadn't been sleeping well for nearly two years and it definitely doesn't help any healing. Meds are an important part of treatment but so is good sleep. Without it, it makes it very difficult to go forward with effective treatment. So, whatever the reason for not sleeping you should discuss it with your doc.

I hope that the whole family settles into a more relaxed time for a while,
all the best,
Katharine
 

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hi tina, i just want you to know that you are in my thoughts and prayers

im so sorry that you are going through so much right now but i think

you are an amazing mother and a true fighter. i will also be prayering for

your children.

take care tina
 

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Hi tina so sorry you have lots going on your end, just wanted you to know im thinking of you all


Hugs Lin xxxxxxxxxxxxxxxxxx
 

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:rain: I'm sorry to hear about all the hard times you and your family are going though. Hang in there. I am thinking of you.:hug:
 

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Dear Tina

I am so sorry to hear you and your children are going through so many major health issues(((hugs))).I know it does not make much sense when you are exhausted and cannot sleep but you are exhausted.I sure will be keeping you and your family in my prayers for sure and please if and when you get the chance let us know how the kids and you are doing.I cannot even imigine how stressed out you might be.(((((hugs)))

Tammy (((((((((((((((hugs))))))))))))))for all of you
 

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Tina,

You have a wonderful family, and are an equally amazing mom. I hope that you feel better very soon. I would wish that some nice person, would come in and let you rest for a while. I hope your fatigue lessens, also.

I will have you in my prayers and was so glad to hear of your faith, also. :)

Love,
Sandy
 
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